Pippa's Journey with a Brain Tumour

Last night wasn’t so flash; first night of the chemo cycle and you were writhing in pain. A pain that grabs your belly and moves up the left side of your neck – I don’t know why that is. The belly pain is understandable but this not the first time you have the neck pain with it. I’m just not sure about that. Maybe last cycle I was wrong? Perhaps the first night on treatment is always going to be rough and nights 2-5 will settle down a bit. Last night was hard. I was tired after driving home, I forgot about you having an empty stomach before we started and everyone was vying for my attention. We missed the timing a bit (due to the empty stomach forgetfulness) and things were pretty awful. I wasn’t going to let you fight it curled up in my bed. I helped you with pain relief so you could fall asleep. After all, you are still battling with a cough as we’ll. It’s the first time I’ve used pain relief for you but your body seemed tiny compares to the pain. I needed to help you and holding you in my arms while we sang wasn’t enough last night. You slept well then ready to wake fresh this morning for your birthday.

Because of your strict diet this week you weren’t able to take your favourite mini mud cakes in to school for your birthday. Instead I made yellow meringues. Yellow is by far the favourite colour now! (with fluro green coming a close second) Happy, bright, smiling, sunshine yellow. That did the trick and ticked the tummy-friendly boxes! A dairy free chocolate cake and sorbet worked a treat after dinner for birthday dessert tonight as we’ll. treatment or no treatment, a girl has to have cake and candles on her birthday! Presents and loads of messages for your birthday along with a trip out to the field days so you didn’t miss seeing Tony and Nan meant that it was a pretty good day. And don’t forget about your gorgeous brothers giving your cuddles, sitting beside you in bed while your opened your presents and just loving you so much.

You were very tired though. I managed the routine better tonight and you were better too. The house was calm, you fell asleep during your massage and you were in bed within the two hour window before that awful pain had a chance to come. Maybe it is a first night thing when those drugs first hit your body at the beginning of each cycle? I’m not sure. I will have to wait and see next time.

For now though, happy birthday, Princess Pippa. I know you will read this; you quite often scroll through this blog on your iPad. I think it is helping you cope with all the changes we are going through. Having the words to read and the pictures to look at helps you understand what has happened and process it all without being scared.

Happy Birthday to You. It is lovely every day to see your beautiful smile spread across your face.

This Thursday 13th February is Pippa’s 10th birthday. We had planned on having a sleepover birthday party on Friday 14th. Last week’s delay of chemo though meant that was not going to be possible – it would not be much fun having your birthday during a treatment week! Thus, the date was brought forward to Friday 7th February and her friends were coming after their weekly tennis lesson. They were all so excited about the activities Pippa had planned.

Pippa waited until her 6 friends had fallen asleep before she came to me feeling terribly unwell. She had been coughing a bit during the week which I had reported to oncology at the hospital but it had become noticeably worse that evening. She told me that she knew she wasn’t well when she just couldn’t laugh enough during the movie they watched but she didn’t want to worry her friends. A hotline to the Royal Children’s hospital for the next few hours, a visit by her GP (very grateful as this was a far better option than taking 9 children to the ED) to make sure she didn’t have a chest infection and she finally fell asleep at 4am. Unfortunately she woke with a temperature that only got worse the next morning. Breakfast in bed from her gorgeous friends barely raised a spark.

We went to ED where she became more lethargic but was still responsive. Blood tests were taken and I again learnt more about this journey. Here I was thinking Pippa must have had a chronic infection or critically low bloods. However tests showed neither was the case and she was diagnosed with bronchitis or as a I would have called it not so long ago, a really bad cough. A really bad cough though can obviously hospitalise her. We spent the night in and she bounced back pretty quickly but will spend a few days off school to rest and have oncology appointments in Melbourne that had to be postponed on Monday.

I now know why I have to be on watch and on standby for every little sign every day.

Pippa will undoubtably have to have another birthday party where she too can have fun without having to put on a brave face.

For the third cycle now Pippa’s blood counts are too low for too long. It’s not a major concern, just a small and apparently rather interesting problem that needs solving. Although now behind on her treatment plan, she continues to be healthy, happy and full of life. As the plan is written in sand anyway I’m not to be bothered by it especially as her doctor is not – he just has to figure out the best way to overcome it. We will make the drive back again to Melbourne on Sunday ready for Monday morning and more blood tests that will hopefully allow chemo treatment.

To think that I am even using the phrase, “hopefully chemo treatment”!

On the upside, Pippa’s MRI report is one, singular word – Stable.

I don’t think I have ever used a singular word to describe anything in my whole life! I certainly haven’t used a single word to “do” anything! This one little word doesn’t tell me a whole lot but apparently it is the best outcome for an MRI result and more importantly, it screams to me patience at a time when I’m getting really itchy feet. I guess the weekly drive down for low blood counts is also teaching me the same lesson.

Seven and a half months ago I literally collapsed into the the doctor who delivered me the very first piece of numbing news. I still cannot believe the daily conversations I now have, the words I have to learn and the information I have to process. I had to be patient to get a diagnosis that could be worked with and treated, patient to wait for the steroids to do their job, patient through radiation, patient for an MRI scan that could be read and now patient to get a consistent treatment plan and continue with what lies ahead. Pippa, although still not missing a beat, is the most patient of all. Never complaining about numerous appointments, treatments, tests nor the thousands of kilometres that we travel. She happily went off to school on the first day of the school year full of excitement to see her friends and teacher but completely OK that she would miss the second one and most of the third.

Pippa (along with her understanding and patient brothers as well) is certainly teaching me some life lessons.